Justin Page is Living with ALS

$14,265
of $100,000 goal

This campaign is for the care and feeding of my friend Justin Page , who I have known for an unbelievable 30 years. About three years ago Justin began to have falls walking up and down steps. Many hospital visits and tests later Justin was officially diagnosed as an ALS patient. He has been fighting it like a champ, including participating in a stem cell trial outside of the U.S. His aggressive treatment and unwillingness to give in, has resulted in an unusually slow progression of the disease. Although he did live in a nursing home for a period, he is currently in an apartment. While he uses a wheelchair or walker, he still stands and has the use of his legs. Some days are better than others, and you can hear that in his voice, which is sometimes strong, and other times obviously stressed. His memory is a bit inconsistent, but not his brilliance or obscene sense of humor.

Justin receives Social Security Disability and Medicare , which are wonderful programs, but let’s say modest. From month-to-month finances are a struggle, which is an added struggle no one with ALS needs. In addition, the stem cell trial he participated in was “FDA unapproved,” though approved in the jurisdiction where it occurred. Simply, the U.S. does not necessarily recognize the medical research in other countries, so although his American doctors are very happy with the results, the “system” is not thrilled about his participation, and that causes hiccups in his benefits at times.

To help in the small way I can, I have created this campaign, which hopefully will bring in some funds for Justin’s continuing needs. If you are able, please contribute. Anything and everything will be greatly appreciated.

To know Justin Page is to love him, and sometimes want to throttle him. He’s a lunatic, and a genius, and infuriating, and my best friend. Give generously, and often.

It's update time. There is good and not so good news. The good news is Justin will be moving, hopefully in March, to a place where he can receive much higher quality and consistent medical services. The bad news is he needs them.

At the most recent visit to Mount Sinai the neurologists said that although he has "atypical" ALS and that it has been progressing slower than most, it's still progressing. He's beginning to have serious breathing issues and eventually will need surgical breathing intervention. Hopefully more aggressive physical therapy will keep that at bay for a while. There is plenty more medical information, but that's about all I can handle right now.

This page is for asking for financial help, and that's what I am here to do. His SSDI isn't covering all his expenses and he will need some moving money. Basically, it's a long-term, chronic, and debilitating illness and the need does not go away, it only gets more pressing.

I've been doing this almost a year and there has been tremendous generosity and kindness. It seems like the asking should end, but as long as he's kicking, there is still a need. If you are able, please contribute now.

I'm sorry to do this at this time of year. I'm sorry to do this ever. I'm sorry it has to be done. I'm sorry that this tragic situation is a burden to anyone.

Justin needs rent money help. His insurance company is leaving the area and he has a new one in January, so the old one is refusing everything, so he's had to pay out of pocket for all sorts of things ... and it's a mess. We're looking into emergency funds, but emergency funds take a long time (not sure what an "emergency" means in bureaucratic terms).

If you can help. I know this is the worst time of year. I know I have asked and asked. But ALS only gets worse. I hate all of this and am tired and very uncomfortable about continuing to ask and ask. I'm not sure what else to do.

It's #GivingTuesday, so here I am again. Not that you all haven't been wonderful about giving on other days.

Today I have an update from Justin himself. First I will say that the last few weeks have been awful! Justin really took a downhill turn and was unable to speak at all for weeks. It was terrifying and heartbreaking. He stopped fighting for a bit and I was preparing for the worst. But, he's back kicking ass and taking names, as best as he can from a bed and wheelchair. He is working with a vocal therapist who has helped him get his voice back about half way and all hope is not lost. But I won't lie, it's rough, and he still doesn't have the level of care he needs. This disease is a bitch, and so are insurance companies.

Here's Justin:

I'm trying to keep my head up. But I seem to be heading the wrong direction. Lots of problems swallowing and bad breathing stuff. I'm going into another drug trial for a medication that appears to improve both of those problems. I try to FB but don't feel funny or irreverent. I'm bitter and angry a lot. On alternative weeks I seem to go into my own world, and I can't remember things. I think I drop back to about 1978. I remember things really well if it happened 40 years ago. Who my home health aide standing in the room who I was just talking to, I have no idea. Most of the time, when I hear music that I love, I just can't take it. I sob (which is not good with breathing problems) and I have to turn it off.

Thank you for all of your support. My old friend Rebecca is hitting everyone up so I can move and get a higher level of care. I really have no family participating and suddenly I miss a family. I grew up just me and my dad and suddenly now I'm a big family advocate. Thanks for being like family.

It seems to be time for a update. It has been a been a difficult month for Justin. He has had several serious falls resulting in a hospitalization, stitches, and serious pain meds. He is starting to have drop falls, where the legs just give out. He had one yesterday leaving the doctor's office. Good timing I suppose, because he was fixed up and checked by the neurologist, but scary. Long story short, he's back in the wheelchair at all times.

What's worse though is an awful symptom common to ALS. He is having difficulty swallowing and can't speak. Eating is problematic and obviously so is communication. Bottom line, he's degenerating. He has had slow moving ALS so far, but the serious symptoms are starting to show.

Last month we were looking into assisted living facilities because his doctors want him in one, well, months ago. This has been quite the task. His insurance company has left NJ and he isn't getting any help there. I have been researching for him and I feel for anyone who has had to do this for a family member. The options are few and on SSDI and Medicare it's pretty much a bed in a shared room with elderly people waiting to die. Self-pay, where you can have a private space, runs about 4k a month on up, plus expenses. I don't know how people do it.

Just so this makes some logistical sense, I am not technically family, Justin is my "brother." I am doing everything I can, but helping him financially isn't an option, and I live six hours away. So even if I were capable of giving the kind of care loved ones give family members, that can't be done at a distance.

He has a daughter, but she's only 18 and can't give him professional nursing care. There is no one else.

The money that has been raised here is being saved to support moving into assisted living, but there is not enough. Not nearly enough. That is no one out there's burden. Everyone has major struggles. But we try to make things work as best we can, and this is what I can offer -- awkwardly repeatedly asking people with their own problems for help.

And again, that is what I am doing. If you have any suggestions, please offer them. If you know the magic to going viral in the Internet, tell me the spell. If all you can do is send well wishes and re-post this, that is appreciated too.